NIH Funding for ME Goes Down in 2018

Fiscal year 2018 is over, so now we can answer the question of whether ME research funding at NIH would go up or down. As I predicted back in July, the answer is down.

image credit: http://jessebharris.com/

Here’s the TL;DR version:

NIH funding for ME research decreased 17% in 2018.

Funding for non-Center grants will decrease an additional 30% in 2019 unless NIH funds enough new grants to replace the expired ones.

NIH’s funding is now heavily concentrated at a small number of institutions.

NIH’s ancillary activities are not sufficient to overcome the funding problem.

Some of the most important contributors are missing in action.

NIH must stop blaming people with ME for the low number of research applications.

Given that NIH funding has decreased, how should we respond?

2018 Actual Numbers

Based on currently available numbers, NIH spent 17% less on ME research in 2018 compared to 2017. How is this possible?

The biggest decrease came in investigator-initiated grants, as I had warned back in October 2017. The ten grants totaled almost $4.7 million. The Collaborative Research Centers and the Data Management Center received just under $7 million combined.**

NIH is currently not providing any numbers for its intramural research, including Dr. Nath’s Clinical Care Center study. I asked when those numbers would be available, and was told it would be several months. Therefore, I expect the final number for 2018 will end up a bit higher, but I won’t speculate as to how much it will change.

Pay attention to that last line. In Fiscal Year 2018, NIH spent $2.3 million LESS than in 2017. This is terrible news. In fact, it’s akin to sliding down a ramp with grease on the skids.

More than 75% of ME research funding came from just two Institutes: Neurological Diseases and Stroke (NINDS) and Allergy and Infectious Diseases (NIAID). That’s not surprising in itself, but the breakdown between those two Institutes is striking.

NIAID’s investment was 2.5 times more than NINDS, and accounted for almost 55% of the total spending on ME. NINDS put the bulk of its investment into the research centers, while NIAID’s investment provided almost 85% of the total spending on investigator-initiated grants.

This is important. NIAID’s contributions are so large that ME research funding would be significantly jeopardized (or enhanced) by a change in that Institute’s funding priorities and decisions. The risk is largest for the investigator-initiated portfolio, as it is funded almost entirely by NIAID.

One more data point to keep in mind: three investigator-initiated grants ended in FY 2018 (Younger, Katz, and Schutzer). This means that grant funding in 2019 will be almost 30% lower, unless NIH funds new grants to replace the expired ones.

What Conclusions Can We Draw?

The funding picture for 2018 leads me to four main conclusions and a strategic question.

The most obvious conclusion is that NIH’s funding is now heavily concentrated at a small number of institutions. The four research centers got more than 65% of the overall funding. Jackson Labs was the huge winner here, receiving $2.7 million combined for its research center and Dr. Unutmaz’s individual grant. That’s almost 24% of the total funding in 2018 going to just one institution.

The concentration of funding at the four Centers is problematic for several reasons. It limits the diversity of ideas and approaches to a small pool of scientists. A change at one of these institutions (such as an investigator moving to a different place) would have a disproportionate effect on the combined portfolio. And if NIH should again lose enthusiasm for the Center model, the field would take a huge monetary loss that could take years to recover from. This is precisely what happened when NIH closed the last group of research centers in 2003.

Remember, NIH has stated multiple times that its strategy is to fund the Centers and wait for that to lead to an increase in investigator-initiated grant applications. In June 2017, Dr. Koroshetz said the Centers would “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”. And in its FY2019 Budget Significant Items, NIH said, “NIH also expects that the CRCs will provide the necessary leadership to attract an increasing number of researchers to this field.”

By concentrating resources at the three CRCs, and assuming that the Centers will do the work of attracting new researchers and spinning off individual grants, NIH is not just taking a slow and conservative approach to growing the field. This approach also limits the directions the field will grow. The ideas and collaborators are limited to what Cornell, Columbia, and Jackson Labs are interested in. That’s fine, if those ideas turn out to be correct. It’s not good if the best answers are outside this circle. De-emphasizing investigator-initiated grants right now could potentially have a limiting effect on the field for years to come.

My second conclusion is that NIH’s ancillary activities are not sufficient to address the problems. The first activity is the NIH conference scheduled for April 3-5, 2019. At the ME/CFS Advocacy Call in July 2018, Dr. Breen of NIAID said the conference would be called “Accelerating Research on ME/CFS” and that planning was underway. Dr. Whittemore of NINDS said that the first day of the conference would be a young investigators’ workshop, modeled on the Invest in ME conference in England.

The second activity is the ME/CFS Working Group of the NINDS Council. Dr. Koroshetz announced the appointed members at the September 2018 NINDS Council meeting: Dr. Steven Roberds, Dr. Armin Alaedini, Dr. Cindy Bateman, Jen Brea (#MEAction), Dr. Dane Cook, Carol Head (SMCI), Dr. Tony Komaroff, Dr. Amrit Shahzad, and Dr. Steven Schutzer. The overall charge to the group is to “Provide scientific guidance to the NANDS Council on how best to advance research on ME/CFS at NIH.”

The third activity is establishing new international partnerships, as Dr. Whittemore described on the July 2018 call. The first is with the Canadian Institute of Health Research, and the second is ongoing discussions with the Medical Research Council in the UK and funding agencies in Australia. International collaborations, especially formalized relationships with analogous agencies, can produce better coordination and funding which then hopefully expands the field.

Despite the promise of these activities, they cannot accomplish enough to overcome the trickle down model NIH is pursuing. Dribbling in small amounts of funding to a very small number of investigators, and waiting for them to attract newcomers to the field, is a very slow and very cautious model. It will not yield results for years. We’ve had conferences and working group recommendations in the past. That has not been enough to propel this field forward at the pace we need.

My third conclusion is that some of the most important contributors are missing in action. In May 2018, Cort Johnson reported that only 12 applications were submitted to NIH between July 2017 and April 2018. I am not aware of how many applications were submitted after that but unless there was a sudden avalanche, the number of applications is too low.

There are dozens of ME researchers who have had NIH funding in the past who do not have it now. Have they been submitting applications? Have they moved on to other funding sources, or lost interest in the field? How many researchers are interested in ME, but have not submitted applications because of perceptions about the difficulty in getting funding? Is ME research still regarded as a kiss of death for a scientific career? Researchers are, understandably, reluctant to discuss this. Lily Chu tried to conduct an anonymous survey on barriers to NIH funding, but not enough researchers responded to make it worthwhile.

Don’t mistake my comments as letting NIH off the hook. The tired old refrain of “we can’t fund you if you don’t apply” is a very convenient way for NIH to pass the blame. We need aggressive, immediate, clear action from NIH at the highest level on an unprecedented scale to address the funding problems. NIH cannot just talk about how much they care, drop in a few bucks, and wait for the researchers to come calling.

Yet there is a kernel of truth to the application problem. We have to do everything we possibly can to force NIH to cough up the money. Researchers, please help us. Think how much stronger our demands would be if we could show Congress that applications have doubled/tripled/quadrupled but funding has not. The only way we can make that argument is to have the evidence, and the evidence depends on you.

When I predicted that NIH funding was going to drop 17% for 2018, I addressed the application conundrum:

We need heroic efforts on all sides. We need NIH to be invest more money, but we also need our researchers to do heavy lifting and get those grants submitted. I know first hand how time consuming writing grant applications can be, and I understand that researchers are reluctant to invest the time if they think funding is unlikely. But we are at the point where submitting more grants is critical, regardless of the predicted likelihood of success.

My fourth conclusion is that NIH must stop blaming people with ME and ME advocates for the low number of research applications and the state of the science. Just about every time NIH is confronted on its approach to ME, we hear some version of “the patients are unreasonable and mean, so no one wants to work on it.” Here are two examples:

Dr. Avi Nath: “And we want to really try and help, but we can’t do that if the very people you want to help become antagonistic towards you.”

Dr. Walter Koroshetz: “Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.”

I have even heard variations of this comment from a few researchers in our field. Don’t be too loud/forceful/demanding, or you’ll scare the poor scientists away.

As I said over a year ago: “People with ME are not the problem. The failure of the research and medical enterprise to take care of people with ME is the problem.” Anyone who repeats the pathetic stereotype that people with ME are to blame for the lack of funding and/or interested researchers needs to sit down and be quiet. It is offensive. It is a distraction.

This leads to my strategic question: Given that NIH funding decreased by 17% in 2018, how should we respond?

Some advocates will say we should continue the thanks and positive reinforcement approach. This strategy relies on the fact that, even with the 17% decrease, $11.6 million is better than any year’s funding prior to 2017. SMCI and #MEAction have seats on the NINDS Working Group. NIH representatives have admitted in public that ME/CFS is a real disease and needs more funding. We have at least a few allies on the NIH campus. This approach says we should cooperate and be patient.

Confrontation and protest, the counter-strategy to cooperation, relies on different facts. Chief among them is the glacial pace of change. The research center money was awarded two years after Dr. Collins promised to ramp up funding. It has been three years since Dr. Collins said, “Give us a chance,” and funding has fallen 17% below the high water mark of 2017.

I know that good research takes time. No one needs to remind me of that. I was 26 when I got sick; I just turned 50. I’ve been an ME advocate for twenty of those years. I am acutely aware of the passage of time. Some things have changed. Many things have not.

I am finding patience and cooperation hard to come by these days. We are falling backwards again. At what point do we say this has gone too far? We must make constant, unbroken, and substantial progress towards effective treatments and cures. If we don’t, then everyone who currently has ME will die with it. Or of it.

30 Responses to NIH Funding for ME Goes Down in 2018

In my younger, healthier days, I was a member of ACT UP NYC. I was there at all of those protests and rallies. I think the main difference is that the newly diagnosed or still healthy people in ACT UP had the energy to get out and fight.

People with ME can barely leave the house, or even get out of bed. If I cross the street to get a few groceries, I’m wiped out for the rest of the day. The thought to standing in the heat all day, with no bathrooms in sight, low blood sugar, and a sore throat from chanting slogans – that was another lifetime ago.

If we can’t march in the streets, what do we do instead? Please don’t say sponsor a marathon.

This is a really important point. I could not stand in the heat for more than a brief time myself. And no, I would NOT suggest sponsoring a marathon!!!!!

There are a couple of alternatives. One is to build stronger relationships with other groups. #MEAction New York had people show up at the Fink’s protest from ACT UP and other organizations. So we do have allies to draw upon. Another possibility is to protest in unconventional ways. For example, at one NIH protest within the last couple years, people sat in lounge chairs. Millions Missing has included people in wheelchairs, lying down. If we could use even a couple of hospital beds, or even IV poles with people who need saline, that would be a powerful picture. And yes, this would mean physical sacrifice on the part of participants, and yes, many people are too sick to do it.

One thing that I have learned very very slowly in advocacy is not to dismiss ideas because they sound hard/impossible. I try to break it down and see where the lever points are. So while ten years ago I thought “we’re all too sick to protest,” now I think, “what are the ways we can make it easier to protest?”

We need to subtract Fred Friedberg’s grants when talking about funding for ME even if NIH doesn’t. He does pure psychological stuff, straight out of the UK playbook. The trial the link above ties two is assessing how the way patients use their time and upsetting events in their life may impact their disease. That is tautology: the disease determines the way people use their time and the disease is the upsetting even in their life.
Also Friedberg needs to go as head of IACFSME, the professional organization. He completely prevents positive action. It needs to be run by one of the ICC or CCC people. And we can’t have a magazine called “Fatigue.”

Cooperation and collaborations gets you cooperation and collaboration. These activities can have value in themselves.
HOWEVER, as the saying goes, people rob banks because that’s where the money is.
Well, at NIH Tony Fauci is where the money is. He has blocked and even sabotaged research and care for us for more than thirty years. And he is so unable to use the $3 billion he has gathered as his NIH annual research budget for HIV-AIDS that he is pissing it away on bogus projects. Also, he controls Collins, not vice versa.
Let’s review the AIDS playbood and copy them, with demos on gurneys as necessary.

My favorite scene from “How to Survive a Plague” is the one showing protesters burning Fauci in effigy. It’s well past time to do it again.

What we really need to know is exactly who is pulling Fauci’s strings. Circumstantial evidence points to disability insurers like UNUM, but we need to know exactly who is the puppetmaster, and go after them.

So far there seems to be little interest in following this line of attack. I think most Americans are not willing to acknowledge the reality of regulatory capture or the extent of corruption at Versailles on the Potomac.

What jimells said!! “What we really need to know is exactly who is pulling Fauci’s strings. Circumstantial evidence points to disability insurers like UNUM, but we need to know exactly who is the puppetmaster, and go after them.”

Nath is Fauci’s boy. He will only produce if Fauci wants him to produce. He’s Fauci’s guy on HIV-AIDS effects in brain. He does nothing for us related to his HIV work. He should make everything related to AIDS work.

Forget Nath doing anything for us as is. He and Wallitt are playing us and the public.

As a former computer consultant I’ve worked at enough organizations, both profit and non-profit, to understand that the neat boxes and lines on a organizational chart often bear little resemblance to the reality of who is influential and able to make things happen – or not happen, as in our case.

Fauci has been at NIH for FIFTY YEARS. He knows where the bodies are buried and how to work the system. Wikipedia says, “He played a significant role in the early 2000s in creating the President’s Emergency Plan for AIDS Relief”. There’s no doubt in my mind he could do the same for ME, if he wanted to.

Agree completely! It is naive to think that power and control in any organization is straight-line down the organizational chart. Nath himself has made clear, just through what we have actually heard him say, that he is impatient with us and also feels he is not given enough credit for ALL that the NIH does for us (where’s the emoji for a Bronx cheer?). And Fauci?! I don’t know enough about the internal operations of the NIH, but I do think jimells is onto something when he says Fauci controls Collins. At the least, Fauci could get Collins to act in ways that Fauci wants.

Thank goodness there is so much (relative to past years) private research going on. The NIH will not change its position for decades, I am convinced, and so will be of no help to us. Please, All, support your favorite private research groups with a little or a lot.

Some collaboration with other communities is taking place. I don’t know if this will help, but there may be more strength and voice in numbers. In its late 2016 newsletter, the Canadian Institutes of Health Research (CIHR) said we have 800,000 Canadians with or Fibromyalgia (FM) or both; starting paragraph 5: http://www.cihr-irsc.gc.ca/e/50100.html

The 2016 Canadian Community Health Survey reported 580,000 Canadians with ME, and or CFS. Teaming up with the FM community adds to this number, and seems like a logical group to ally with. However, we have seen our two diseases lumped in together as MUS in the past: something to be wary of. We have two advocacy groups in Canada, perhaps more, that work for both ME and FM communities: the National ME/FM Action Network and the ME/FM BC Society.

Alliances with the POTS, and women’s rights communities has also been a good step to take. If nothing else, it spreads awareness. And, I do hope for more than that – I don’t have low expectations.

Overall, as you and deboruth say, the funding scene is not good. Canadian research funding has been slow to nil. The last Canadian research grant designed to collaborate with the three NIH funded centres was not successfully funded. However, if I recall correctly, there will be a meeting some months from now with the community, and researchers to try and improve the situation. I see NIH has plans for the same thing.

I wish there was some new and innovative method that could be used to not only increase the funds, but get the money out there to good studies. The Solve ME/CFS Initiative is doing very well with its Ramsay grants. I don’t think this group lacks for applications. Funding shortages are more the problem. Maybe NIH and CIHR could follow this model – or contract with this group and others.

Thank you, Jennie for keeping us up to date on this vital issue. I hope the logjam is broken soon!

Correction: in its 2016 newsletter, CIHR said there are 800,000 with ME, or FM or both.

Another avenue, because we need to work on many fronts is to keep donating to organizations like the Open Medicine Foundation, and the Solve ME/CFS Initiative, both which are expanding research, and bringing new researchers in. Other organizations also deserve recognition, and continued funding, as they work on other aspects of this push for recognition, respect, education, treatments and a cure.

There also is Action CIND (www.actioncind.org) that supports ME, FM and MCS. We would be happy to work to raise more funds for research. We have similar issues with our CIHR (Canadian Institutes of Health Research) as you do with NIH. We need both of these agencies supporting us. Feel free to contact me at info@actioncind.org.

Of course, contracting out doesn’t solve the problem of inadequate research funding in the first place.

However, since 2016, CIHR has provided increased funding, but the bulk ot it has failed to be awarded. In this circumstance, where funds are available and go unused, a subject matter expert group handling the application and granting process may be able to solve this problem.

This was a like a two-by-four against the head. The good news is that a blog like – so rigorously documented -as unsettling as it is – provides us the data we need to show the NIH that their one-track, half-baked approach to reinvigorating the ME/CFS field was ill-conceived and needs to be supplemented.

Perhaps contracting with established ME community groups would be a viable way to go. These groups are subject experts, and have proven track records administering research and grants. A more approachable body for researchers, that maintains high standards for granting research funds. As well as having contacts in this field.

Governments contract out all the time. And, government monitoring practices are normally, or usually in place.

We would want contracts to go to established biomedical groups, who could then spin out research grants to applicants in the field.

ugh. seriously, this makes me want to puke or cry. or do both at the same time. what the heck! when will we be treated like human beings instead of like a fly that has become a bother that needs to be swatted aside? don’t our lives count?

Thank you for this comprehensive analysis, Jennie. As Cort said, it’s like a two-by-four against the head. My hope is that the information you’ve provided will be put to good use by giving people the data they need to continue to fight for the recognition and the money we need to find out what this illness is and how to go about treating it. The news is discouraging but an analysis like this is crucial to bringing about change. Thank you for the hard work you continually engage in as an advocate for all of us—all while sick yourself. You are truly amazing and the ME/CFS community is blessed to have you fighting for us.

Now I’m gonna ask for more! Well, if you’ve got it or can point to it…

I’ve found useful, when showing budget numbers to non-ME-patients, to offer comparisons to the funding for other disabling diseases like MS, or not-even-disabling conditions like male pattern baldness. Are some of those comparisons available, from the new budget?

Another eye-opening article that reminded me of having read recently that the CFSAC had been disbanded by some power-that-be, stating “it’s mission has been accomplished”. Or is it to get us to shut up? Who has such power to make such a decision anyway?
My personal opinion but the issues of CFS vs. ME have caused divisiveness among the many CFS/ME groups and at times there would appear to be a power struggle rather than cooperation. I also feel strongly that it’s past time that we have a national organization as other diseases have. Why do we not? And since we have diagnostic criteria, why is there not a new PSA being shown around the USA? And why are the teaching modules for students not in place? All this was planned but forgotten. Our Primer for Current Practitioners has never been updated and Dr. Friedberg emailed me personally that for 100K he would gather the group together. The online version of this manual states that it will remain updated. So, what does the IACFS do? More questions, I know, but we do need to decide on a direction together.